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Response to AHRQ Request for Comments on Healthcare Delivery of Preventive Services for People with Disabilities

Tuesday, May 30, 2023

Submitted electronically to https://effectivehealthcare.ahrq.gov/products/form/people-with-disabilities

May 30, 2023

Scientific Resource Center
Portland VA Research Foundation
3170 SW U.S. Veterans Hospital Road
Mail code: R&D 71
Portland, Oregon 97239

Re: Response to AHRQ Request for Comments on Key Questions for Healthcare Delivery of Preventive Services for People with Disabilities

To Whom It May Concern:

The National Council on Disability (NCD) is responding to the Agency for Healthcare Research and Quality’s (AHRQ) request for comments on Healthcare Delivery of Preventive Services for People with Disabilities.[[1]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn1)

The National Council on Disability (NCD) is an independent, bipartisan federal agency charged with providing advice to the President, Congress and federal agencies on matters affecting the lives of people with disabilities. Per its authorizing statute, NCD is required to “review and evaluate on a continuing basis - policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by Federal departments and agencies…in order to assess the effectiveness of such policies, programs, practices, procedures…in meeting the needs of individuals with disabilities.”[[2]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn2) NCD also “review(s) and evaluate(s) on a continuing basis new and emerging disability policy issues affecting individuals with disabilities at the Federal, State, and local levels,…including access to health care.”[[3]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn3)

NCD commends AHRQ for seeking information on barriers and facilitators of preventive care for people with disabilities. Equitable healthcare and nondiscriminatory access to health care for people with disabilities is a priority issue for NCD. We have been actively voicing our concerns to Department of Health and Human Services’ offices for several years regarding continuing disparities in the health status, health outcomes, and unequal access to preventive and specialty care between people with disabilities and their non-disabled peers. Most recently, NCD has requested that the National Institute on Minority Health and Health Disparities and AHRQ designate people with disabilities as a “Health Disparity Population.”[[4]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn4) Although Federal civil rights laws, e.g. Section 504 of the Rehabilitation Act (Section 504), the Americans with Disabilities Act (ADA), and Section 1557 of the Affordable Care Act (Section 1557) prohibit discrimination against people with disabilities and require health care providers to remove barriers to receiving care by, among other things, modifying policies, practices and procedures; providing effective communication; and providing physically accessible facilities – programmatic, physical, and attitudinal barriers in health care settings systemically continue to impede access to health care for many people with disabilities.

We offer the following comments in response to your questions:

  1. What are the primary barriers and facilitators to preventive service use among people with disabilities to include, but not limited to, the following:

    1. Environment-level (e.g., transportation)
    2. Person-level (e.g., fear, discomfort)
    3. Health system (e.g., insurance, identification of disability type in EMR)
    4. Accessibility of health facilities
    5. Accessible communication
    6. Provider-level (e.g., disability knowledge and assumptions)
    7. How do these barriers vary by type of disability, gender, race/ethnicity, LGBTQ+ status, geographic location

Comment

Missing from possible responses is “all of the above.” Responses “a” through “f,” are pervasive barriers affecting all people with disabilities, in general, and depending on the specific disability, the impact of those barriers may vary. Some of the primary barriers to preventive health services for people with disabilities are:

  • For persons with mobility disabilities, inaccessible physicians’ offices. For example, examination rooms within physicians’ offices that do not meet federal accessibility requirements as they are too small for a person to maneuver their wheelchairs or other wheeled mobility devices without risking injury to themselves or damage to their mobility devices.
  • For persons with mobility disabilities, inaccessible medical diagnostic equipment (MDE), such as height-adjustable exam tables and other diagnostic equipment used in preventive screenings. Without widespread availability of height adjustable examination tables, accessible mammography equipment, accessible weight scales and lift equipment to facilitate transfers, among other accessible medical and diagnostic equipment, people with mobility disabilities will remain less likely to receive recommended preventive health care services—like cervical cancer screening; colorectal cancer screening; obesity screening; and breast cancer screening. Moreover, the absence of such equipment will continue to perpetuate health care disparities between people with physical disabilities and their nondisabled counterparts – the lack of accessible MDE contributes to a lack of preventive care that is necessary for early diagnosis of diseases and has been linked to poor health outcomes, poorer quality of life, and shorter length of life for people with disabilities. The lack of accessible MDE means that people with mobility disabilities receive substandard primary care compared to people without disabilities. When a person cannot be properly examined because he cannot transfer onto an exam table or a diagnostic machine, non-diagnosis and misdiagnosis are likely. Disease and illness that may be treatable if caught early may become worse or incurable, resulting in high human and economic costs of treating preventable illnesses.[[5]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn5)
  • Clear communication between a health care provider and a patient is critical for the receipt of proper care. Poor communication in healthcare can be life-altering or life-ending.[[6]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn6) Federal law requires health care providers to provide appropriate auxiliary aids and services necessary for effective communication with people who are deaf, hard of hearing, blind, have vision loss, or otherwise need alternative forms of communication. Challenges in receiving these aids and services result in a continuing barrier in health care settings for people with those categories of disabilities. Without appropriate auxiliary aids and services, people requiring them cannot participate in their own health care, cannot effectively communicate their needs and concerns, and experience barriers in understanding medical information and making informed decisions. The ADA requires that patients’ preferences be prioritized when choosing among auxiliary aids and services to achieve effective communication—such as American Sign Language (ASL) interpreters, communication access real-time translation (CART), or auxiliary aids for persons with hearing deficits,[[7]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn7) and qualified readers, braille materials, and enlarged fonts for persons with low vision.[[8]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn8) ADA Title II  healthcare entities (i.e., practices or healthcare facilities operated by state or local governments) are legally required to give “primary consideration” to patients’ preferences, while Title III  healthcare entities (i.e., private practices or healthcare facilities operated by private entities) are encouraged to consult patients and emphasize their needs. Despite these long-standing federal requirements, people with disabilities continue to face challenges receiving the auxiliary aids and services that are most effective for them in health care settings.
  • Widespread physicians’ negative attitudes and bias against people with disabilities, compounded by the lack of disability clinical-care education and training obstructs access to quality healthcare. Medical literature, government agency reports, and court decisions demonstrate that individuals with disabilities face discrimination at every stage of the medical treatment process. Medical provider biases and stereotypes about life with a disability negatively impact the doctor-patient relationship, and confidence and trust in physicians and in the greater medical establishment. Explicit and implicit bias can manifest in different contexts, including ‘overshadowing’ in medical diagnoses – where the person’s underlying disability is thought to be the cause of new symptoms. It can be seen in day-to-day treatment decisions, emergency care decisions, and in the inequitable allocation of scarce medical resources in health crises.

In a recent research article, I Am Not The Doctor For You: Physicians’ Attitudes About Caring For People With Disabilities, researchers described the barriers people with disabilities face when attempting to access health care.[[9]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn9) Using qualitative analysis of three physician focus groups, they identified physical, communication, knowledge, structural, and attitudinal barriers to care for people with disabilities. Some physicians reported that because of these concerns, they attempted to discharge people with disabilities from their practices. The findings also suggest that physicians’ bias and general reluctance to care for people with disabilities play a role in perpetuating the health care disparities they experience.[[10]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn10)

The absence of accessible transportation, particularly in rural settings impede access to medical care and other life activities for persons with disabilities. Research finds that transportation barriers can cause people with disabilities to forego preventive care and use emergency departments more frequently, resulting in both lack of medical care continuity and poorer health.[[11]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn11) Transportation inaccessibility includes physical barriers in vehicles and at transit stops, or systems that requires skills such as advance comprehension and literacy to navigate.[[12]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn12)

The barriers to preventive health care services for people with disabilities are multifaceted and pervasive. From inaccessible physicians’ offices and diagnostic equipment to challenges in communication and negative attitudes among health care providers, these barriers hinder access to quality health care. The lack of appropriate auxiliary aids and services for their exacerbates the issue, preventing effective communication and inhibiting patient participation in their own care. These barriers lead to significant health disparities between people with disabilities and their nondisabled counterparts and adversely affects health care outcomes contributing to a reduced quality-of-life.

  1. What is the effectiveness (i.e., benefits and harms) of intervention programs to mitigate barriers to preventive service use among people with disabilities to include, but not limited to, the following:

    1. Environment-level (e.g., transportation)
    2. Person-level (e.g., fear, discomfort)
    3. Health system (e.g., insurance)
    4. Accessibility of health facilities
    5. Accessible communication
    6. Provider-level (e.g., disability knowledge and assumptions)
    7. How does effectiveness vary by type of disability, gender, race/ethnicity, LGBTQ+ status, geographic location?

Comment

AHRQ defines the term “intervention programs” in this question as “[p]rograms to accommodate a disability in the delivery of a clinical preventive service. These include modification in policies, practices, and procedures; effective communication; and the physical accessibility of facilities (italics added).”[[13]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn13) The foregoing examples of intervention programs are in fact actions health care providers are required to undertake, subject to applicable affirmative defenses, to comply with the Federal nondiscrimination mandates applicable to patients with disabilities.

We are deeply concerned that AHRQ fundamentally misunderstands the true nature and purpose of the civil rights protections of people with disabilities as it has drafted a question that appears to be asking for the public to describe the “benefits and harms” of providing barrier removal and accommodations required under the Federal civil rights for people with disabilities that are guaranteed under the ACA,[[14]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn14) Title II and Title III of the ADA,[[15]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn15) and Section 504.[[16]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn16) By their very nature, these rights and obligations fall outside of an analysis that is used to measure a clinical intervention. Civil rights protections are not contingent on measuring “ineffectiveness” through benefits and harms, akin to clinical intervention. Rather, they are rooted in the fundamental principles of equal opportunity, nondiscrimination and inclusive access to health care services for all individuals, regardless of disability. By reducing the discussion to effectiveness metrics, the question overlooks the broader significance of civil rights protections.

Health care providers’ civil rights obligations are fundamentally different from clinical intervention like a cancer screening, where effectiveness is measured by an examination of the “benefits” (estimated lung cancer deaths averted and life-years gained) compared with “harms” (no screening, false-positive results, overdiagnoses, radiation-related lung cancer deaths, and harmful side effects).[[17]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn17) These civil rights obligations were created to allow people with disabilities to access clinical interventions like cancer screenings and more broadly to address the harm caused by persistent barriers and discrimination that prevent people with disabilities from accessing services, including health care. Without them, many people with disabilities could not access critically needed health care today.

Civil rights interventions, like the provision of auxiliary aids for effective communication between physicians and patients; the availability and use of height adjustable examination tables, height adjustable mammography equipment; the availability of wheelchair accessible weight scales; the provision of written medical information in alternative formats; or the modification of policies and practices to permit additional time to communicate and care for the needs of people with intellectual or developmental disabilities are unquestionably beneficial to both patients and providers. Harms are caused by barriers that prevent access to health care, including inaccessible health care facilities, the inability of patients who are deaf or hard of hearing to effectively communicate with their health care providers, and policies, practices and procedures that discriminate against people with disabilities. When health care providers do not provide people with disabilities the modifications and/or physical and programmatic access that are required by law, several harms result, including – the perpetuation of health disparities between people with disabilities and their non-disabled peers; discrimination complaints against health care providers filed with Federal enforcement agencies, e.g. HHS Office for Civil Rights when protected rights are violated; and a loss of trust and confidence in health care providers by people with disabilities which can result in delaying or forgoing needed health care.[[18]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn18)

The mention of “benefit and harms” is not a relevant framework to assess the effectiveness of “interventions” required under the Federal civil rights laws. In the context of accessibility and barrier mitigation, it would be more appropriate to focus on the outcomes and impact of acts of intervention, such as improved access to health care services, increased utilization preventive services, enhanced patients’ satisfaction and reduced disparities and healthcare outcomes.

We advise AHRQ to revisit the wording of this question and clarify what it is seeking to measure.

  1. What are the characteristics and/or components (e.g., staffing, funding, facilities, training) that contribute to success or failure of intervention programs to mitigate barriers to preventive services among people with disabilities to include, but not limited to, the following:

    1. Environment-level (e.g., transportation)
    2. Person-level (e.g., fear, discomfort)
    3. Health system (e.g., insurance)
    4. Accessibility of health facilities
    5. Accessible communication
    6. Provider-level (e.g., disability knowledge and assumptions)
    7. How do the characteristics and/or components that contribute to success or failure of implementation programs vary by type of disability, gender, race/ethnicity, LGBTQ+ status, geographic location

Comment

A provider-level characteristic that significantly undermines efforts to mitigate barriers to preventive care is ableism. Ableism within our healthcare system and among healthcare professionals is pervasive and can be likened to an infectious disease, spreading throughout health care systems and adversely impacting other interventions aimed at removing barriers for people with disabilities. Ableism perpetuates discriminatory attitudes, biases, and assumptions towards people with disabilities, leading to inadequate access, inadequate communication and substandard care. There is a significant body of literature that speaks to the dangers of physicians’ implicit bias, attitudes and beliefs contributing to inadequate or inappropriate clinical decisions and results in the failure to make appropriate recommendations for preventive care for people with disabilities as well as for minority and ethnic groups. How people with disabilities are seen is how they are treated. As noted in our comments to question number one above, a recently published study revealed that 82.4% of US physicians nationwide believe that people with significant disabilities have worse quality of life than nondisabled people.[[19]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn19) Several other studies discuss ableism and diagnostic overshadowing in health care and its negative impacts on patients with disabilities.[[20]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn20) The pandemic exacerbated this insidious pre-existing type of discrimination within our health care system and among health care providers. Ableism was clearly manifested in the adoption and implementation of Crisis Standards of Care and other medical rationing policies by states, health care systems and hospitals that specifically targeted people with certain disabilities for lack of life-saving care or putting them at the back of the line for care. It was so profound and prevalent that HHS’ Office for Civil Rights had to issue a bulletin to health care providers, to ensure that entities covered by civil rights authorities understood their civil rights obligations under federal civil rights laws.[[21]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn21) The adoption and implementation of disability clinical-care curricula and training in all undergraduate medical and allied health professional education as well as post-graduate residency and fellowship programs that is conducted in over 1100 teaching hospitals would help physicians provide more clinically-competent and nondiscriminatory care to patients with disabilities.

As described in our comment to question number one above, continued challenges in the ability to effectively communicate with health care providers contributes to the failure to mitigate barriers to preventive care. A recent study suggests that important gaps remain in ensuring effective communication, and some practicing physicians could benefit from formal training in effective methods for communicating with patients with disability.[[22]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn22) In the study, physicians’ concerns were in four categories: communication experiences with people who are deaf or hard of hearing, communication with people who are blind or have vision impairment, communication with people who have intellectual disability, and recommendations for improving communication. Although the physicians participating in the study reported various efforts to communicate effectively with patients with hearing or vision loss or intellectual disability, many gaps existed, and physicians’ preferences sometimes ran counter to patients’ wishes and the ADA. Examples include physicians’ preferences for remote, online sign language interpreters despite patients desiring in-person interpreters and suggesting that patients arrange for their own interpreters. The researchers found that few educational materials are available in braille, and electronic medical records do not always allow documents to be printed in large font for persons with low vision. Communicating with patients with intellectual disabilities was also a concern, with participant physicians often preferring to interact with caregivers and making minimal efforts to involve patients.[[23]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn23)

Also described in our comment to question number one – we reiterate that the lack of accessible medical diagnostic equipment (accessible MDE) in health care facilities remains common and is a significant barrier to quality, appropriate care for people with mobility disabilities. The lack of height-adjustable exam tables and other diagnostic equipment continues to be a failure to mitigate barriers to preventive health care and perpetuates health disparities and poorer health outcomes for this population. NCD describes this issue in depth in our report and letters to HHS on accessible medical diagnostic equipment.[[24]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftn24) This is also a topic for an upcoming rulemaking by the Department of Justice.

NCD appreciates this opportunity to provide comments on preventive care for people with disabilities. We recommend that AHRQ seek information broadly in its further efforts to inform its research on this topic, including the input of disability organizations and people with disabilities. Should you have questions about anything in this response, please contact the undersigned at agallegos@ncd.gov or Joan Durocher, J.D., NCD’s General Counsel and Director of Policy at jdurocher@ncd.gov.

Respectfully submitted,

 

Andrés J. Gallegos, J.D.

Chairman

 

[[1]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref1) https://effectivehealthcare.ahrq.gov/products/people-with-disabilities#ref4 (May 5, 2023).

[[2]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref2) 29 U.S.C. § 781(a)(5) - (a)(6).

[[3]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref3) 29 U.S.C. § 781(a)(10).

[[4]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref4) NCD Letter to NIMHD, AHRQ regarding health disparity population designation for people with disabilities (December 7, 2021) at https://ncd.gov/publications/2021/ncd-letter-nimhd-ahrq-health-disparity-population-designation; NCD Letter to AHRQ on ADME Report (August 2, 2021) at https://ncd.gov/publications/2021/ncd-letter-ahrq-adme-report; NCD letter to HHS Secretary Azar on need for accessible medical equipment rule (July 31, 2020) at https://ncd.gov/publications/2020/ncd-letter-hhs-secretary-azar-accessible-medical-equipment-rule; NCD letter to HHS Secretary Becerra concerning health equity (June 8, 2021) at https://ncd.gov/publications/2021/ncd-letter-hhs-secretary-becerra-concerning-health-equity; Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities (May 20, 2021) at https://ncd.gov/publications/2021/enforceable-accessible-medical-equipment-standards; NCD Letter in response to HHS OCR Bulletin on civil rights, HIPAA, and COVID-19 (March 31, 2020) at https://ncd.gov/publications/2021/enforceable-accessible-medical-equipme…

https://ncd.gov/publications/2020/NCD-letter-response-ocr-bulletin-civil-rights-hipaa; Bioethics and Disability Report Series (Fall 2019) at https://ncd.gov/publications/2019/bioethics-report-series; Advisory Letter in Response to Section 1557 Notice of Proposed Rulemaking (August 27, 2019) at https://ncd.gov/publications/2019/advisory-letter-1557; NCD Letter to U.S. Attorney General Sessions Regarding Necessity & Appropriateness of Accessible Medical Equipment Regulations (August 13, 2018) at https://ncd.gov/publications/2018/letter-us-attorney-general-sessions-accessible-medical; The Current State of Health Care for People with Disabilities (September 30, 2009) at https://ncd.gov/publications/2009/Sept302009.

[[5]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref5) See, NCD Letter to AHRQ on ADME Report (August 2, 2021) at https://ncd.gov/publications/2021/ncd-letter-ahrq-adme-report; NCD letter to HHS Secretary Azar on need for accessible medical equipment rule (July 31, 2020) at https://ncd.gov/publications/2020/ncd-letter-hhs-secretary-azar-accessible-medical-equipment-rule; Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities (May 20, 2021) at https://ncd.gov/publications/2021/enforceable-accessible-medical-equipment-standards

[[6]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref6) The Joint Commission on Accreditation of Healthcare Organizations found that communication failures were involved in over 70 percent of patient safety events that result in death, permanent harm, or severe temporary harm. Katherine Dingley et al., Improving Patient Safety Through Provider Communication Strategy Enhancements, Advances in Patient Safety: New Directions and Alternative Approaches (Vol. 3: Performance &Tools) (2008), https://www.ncbi.nlm.nih.gov/books/NBK43663/.

[[7]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref7) Civil Rights Division, Department of Justice. ADA business brief: communicating with people who are deaf or hard of hearing in hospital settings. https://www.ada.gov/hospcombr.htm.

[[8]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref8) ADA National Network. What kinds of auxiliary aids and services are required by the ADA to ensure effective communication with individuals with hearing or vision impairments? https://adata.org/faq/what-kinds-auxiliary-aids-and-services-are-required-ada-ensure-effective-communication.

[[9]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref9) Tara Lagu, Carol Haywood, Kimberly Reimold, Christene DeJong, Robin Walker Sterling, and Lisa I. Iezzoni, Health Affairs, Volume 41, No. 10, (2022): 1387-1395. https://www.healthaffairs.org/doi/10.1377/hlthaff.2022.00475

[[10]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref10) Id.

[[11]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref11) Health Research & Educational Trust. (2017, November). Social determinants of health series: Transportation and the role of hospitals. Chicago, IL: Health Research & Educational Trust. Accessed at www.aha.org/transportation

[[12]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref12) Id.

[[13]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref13) https://effectivehealthcare.ahrq.gov/sites/default/files/related_files/healthcare-delivery-preventive-services-key-questions.pdf

[[14]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref14) See, 45 CFR § 92.205 (Requires covered entities to make reasonable modifications to policies, practices, or procedures when necessary, to avoid discrimination on the basis of disability, except if the modification would fundamentally alter the nature of the health program or activity); 45 CFR § 92.204 (Requires covered entities to ensure that their health programs or activities provided through electronic and information technology are accessible to individuals with disabilities, unless doing so would result in undue financial and administrative burdens or a fundamental alteration in the nature of the health programs or activities); 45 CFR § 92.203 (Requires that new construction or alteration of buildings or facilities must comply with the 2010 ADA Standards for Accessible Design by January 18, 2018, with certain exceptions); 45 CFR § 92.202 (Requires covered entities to provide appropriate auxiliary aids and services to persons with impaired sensory, manual, or speaking skills, where necessary to afford such persons an equal opportunity to benefit from the service in question).

[[15]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref15) See, 28 CFR § 35.130(b)(7)(i) (Requires public entities to make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity); 28 CFR § 35.160(b)(1) (Requires public entities to furnish appropriate auxiliary aids and services where necessary to afford qualified individuals with disabilities, including applicants, participants, companions, and members of the public, an equal opportunity to participate in, and enjoy the benefits of, a service, program, or activity of a public entity); 28 CFR § 35.150 ((Existing Facilities) (Requires that each service, program, or activity conducted by a public entity, when viewed in its entirety, be readily accessible to and usable by individuals with disabilities); 28 CFR § 35.151(a)(1) (New construction and alterations) (Requires that each facility or part of a facility constructed by, on behalf of, or for the use of a public entity is designed and constructed in such manner that the facility or part of the facility is readily accessible to and usable by individuals with disabilities, if the construction was commenced after January 26, 1992). See, also requirements of public accommodations under 28 CFR § 36.301 (prohibiting the use of discriminatory eligibility criteria); 28 CFR § 36.302 (requiring reasonable modifications in policies, practices or procedures); 28 CFR § 36.303 (requiring the provision of auxiliary aids and services to achieve effective communication; and 28 CFR § 36.304 (requiring the removal of barriers were readily achievable).

[[16]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref16) 45 CFR 84.22(a) ((Existing Facilities) (A recipient shall operate its program or activity so that when each part is viewed in its entirety, it is readily accessible to handicapped persons); 45 CFR 84.23(a) ((New Construction) (Each facility or part of a facility constructed by, on behalf of, or for the use of a recipient shall be designed and constructed in such manner that the facility or part of the facility is readily accessible to and usable by handicapped persons, if the construction was commenced after May 4, 1977);(45 CFR 84.52(d)(1)((Auxiliary Aids) (Requires a recipient that employ fifteen or more persons to provide appropriate auxiliary aids to persons with impaired sensory, manual, or speaking skills, where necessary to afford such persons an equal opportunity to benefit from the service in question).

[[17]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref17) Meza, R; Jeon, J. Evaluation of the Benefits and Harms of Lung Cancer Screening with Low-Dose Computed Tomography: Modeling Study for the US Preventive Services Task Force. JAMA. 2021;325(10):988-997. doi:10.1001/jama.2021.1077.

[[18]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref18) See, footnote 5, supra.

[[19]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref19) Id at footnote 9.

[20] Diagnostic overshadowing among groups experiencing health disparities. The Joint Commission. The Sentinal Event Alert, Issue 65, June 22, 2022. “Diagnostic overshadowing is harm that comes from clinician cognitive bias contributes to health disparities and is of particular concern in groups experiencing health disparities, such as individuals with disabilities.” https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety-topics/sentinel-event/sea-65-diagnostic-overshadowing-6-16-22-final.pdfAdvancing Health Equity For People With Intellectual And Developmental Disabilities; World Health Organization: Fact Sheet on Disability and Health. (2022) Health inequities arise from unfair conditions faced by persons with disabilities. Two highlighted factors are: Structural factors: Persons with disabilities experience ableism, stigma and discrimination in all facets of life, which affects their physical and mental health. Laws and policies may deny them the right to make their own decisions and allow a range of harmful practices in the health sector, such as forced sterilization, involuntary admission and treatment, and even institutionalization. Health system: Persons with disabilities face barriers in all aspects of the health system. For example, a lack of knowledge, negative attitudes, and discriminatory practices among healthcare workers; inaccessible health facilities and information; and lack of information or data collection and analysis on disability, all contribute to health inequities faced by this group. https://www.who.int/news-room/fact-sheets/detail/disability-and-health.

[[21]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref21) OCR-Bulletin-3-28-20.Pdf (hhs.gov).

[[22]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref22) Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Communicating with Patients with Disability: Perspectives of Practicing Physicians. J Gen Intern Med. 2019 July; 34(7):1139-1145.

[[23]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref23) Id.

[[24]](https://ncd.gov/publications/2023/response-ahrq-request-comments-healthcare-delivery-preventive-services-people#_ftnref24) NCD Letter to AHRQ on ADME Report (August 2, 2021) at https://ncd.gov/publications/2021/ncd-letter-ahrq-adme-report; NCD letter to HHS Secretary Azar on need for accessible medical equipment rule (July 31, 2020) at https://ncd.gov/publications/2020/ncd-letter-hhs-secretary-azar-accessible-medical-equipment-rule; NCD letter to HHS Secretary Becerra concerning health equity (June 8, 2021) at https://ncd.gov/publications/2021/ncd-letter-hhs-secretary-becerra-concerning-health-equity; Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities (May 20, 2021) at https://ncd.gov/publications/2021/enforceable-accessible-medical-equipment-standards.

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